Caregiving

'A Bittersweet Season'

Interview with Jane Gross, the author of a new book on being a caregiver

It was a match made in heaven: me, a reporter with a 91-year-old mother and mother-in-law, assigned to interview a reporter who has written a book about her sick, frail mother's final four years. And so, while it might have taken another writer 30 minutes to interview Jane Gross, author of A Bittersweet Season: Caring for Our Aging Parents — and Ourselves, our two-hour talk could have gone longer if it hadn't been interrupted by a call from my mother-in-law.

Hopefully for Gross, a former New York Times staffer and founder of the Times'New Old Age blog, many others in our demographic will find her primer for old, old age — and the adult children who take care of their parents — a godsend. Gross distills dense concepts such as Medicaid and Medicare, explains the shortcomings of even first-rate nursing homes, medical specialists and emergency rooms, and offers suggestions for dealing with a health care system that stymied, stumped and infuriated her. She writes about her ailing mother's move from an assisted living facility in Florida to another briefly in New York, near Gross and her brother, and then to a nursing home, where she died at age 88.

What may be most valuable about A Bittersweet Season, however, is the writer's candor, whether it's admitting to wishful thinking that her mother just hurry up and die, describing her loneliness and emotional pain, or dissecting spats with her brother Michael Gross, a prominent author.

In an interview with the AARP Bulletin, Jane Gross shares other insights.

Q. You describe your mother as no-nonsense, difficult and unaffectionate. How hard was it caring for someone you didn't feel close to, and toward the end of her life, did it change?

A. It was difficult all the way, but our relationship changed dramatically in the last two years. I came to love her, and she came to love me, and my guess is we both did all along in our own prickly way, but it was all out there at the end. I hadn't expected it to have a redemptive piece, but rather be something I did gritting my teeth because it was the right thing to do.

Q. You and your brother didn't always agree on caregiving,and there were tensions. What kind?

A. Fortunately, none were about big things. We never disagreed about medical, residential, financial or end-of-life decisions. I thought we should never both be out of town at the same time, and he thought I was obsessive. We fought about that quite a lot and what I would describe only in retrospect as my self-righteousness. It was "there's only one way to do it and that's my way." A lot of my attitude had to do with that whole Mommy-liked-you-better thing. My brother was calmer, and that's a male thing. Men compartmentalize better. And frankly, part of my annoyance with him was that he wasn't having as hard a time as I was.

A. Mostly we didn't in the moment. But even when it was happening, I appreciated that he was responsible, involved and utterly devoted to my mother. He was in no way the deadbeat brother that you read about, and I knew that.

Q. And after your mother died?

A. Little by little, we talked about it. Michael was the one who persuaded me to write the book, and as a fellow journalist he understood how much of the book was going to be very personal, and therefore about him. He read every word about us and objected to almost nothing.

Q. What's your relationship like now?

A. We are closer, but not forcibly so the way we were those last four years, and just as my mother and I came to admire each other's strengths those last two years, Michael and I also came to admire each other's strengths.

Q. You're so honest. You say that during your caretaking phase, you felt lonely and isolated, at times you wanted to run away or wished your mother would die, and you resented being "yoked" to your brother. Don't you think these are normal feelings?

A. Yes! What was most important to me in the book was not the point-by-point "how to's" — I don't actually think you can do that anyway, given how different and utterly unpredictable our parents' trajectories are — but giving other people permission to feel as angry, lonely, trapped, scared and crazy as I did. It's hard to believe there's anyone who doesn't occasionally wish his or her parent would just die so it would be over, but I never heard anyone say that out loud. People don't talk about what a hard time they're having. And nobody wants to hear about it, which I think contributes to the loneliness.

Q. There's so much we can't control about old age. What is up to us, the children?

A. You can't control what your parents, in-laws or your own physical and cognitive problems are going to be, how much is going to be fixable or what it will cost, how long it's going to take, and what it's going to do to your family. What is up to us is controlling if we want to be in denial or not. You have to accept that once parents hit age 85, the vast majority are going to need on average two years of custodial assistance of some kind. You can't walk around thinking they'll be in the small minority who live at home, drive the car, play tennis and then kaboom, drop dead one day without a ton of scary decision-making and enormous expense, or kicking up the old family dust. God bless them if that's how it works out, but it mostly doesn't. People need to try not to be so afraid of dealing with it [sickness and frailty in old age]. You're doing yourself and your parent a disservice if you wait too long to think about this.

A. You're almost guaranteed, as my brother and I did, to screw it up in certain ways if you're thinking about it hard for the first time in the middle of a crisis. Most of the mistakes we made were in the first two years after we brought my mother back from Florida because we were scared and rushing. Once we passed the panic stage, my brother and I were good problem solvers and information gatherers.

Q. You two are seasoned journalists, and yet it was a steep learning curve for you. Imagine what it's like for the rest of us! Also, neither you nor your brother has children and you were able to devote more time than most to your mother. Any advice?

A. If you don't have a great geriatrician, and very few of us will because of the shortage of them, consider a geriatric care manager. I've heard a million people say they can't afford and don't need one, but if my brother and I had gone to one early on, we would have saved money by not making mistakes.

Q. How do you find a good one?

A. The more established professions like the geriatric care manager and elder care lawyer have national associations and standards and are a reliable place to start. I would also take recommendations from friends and colleagues.

Q. Anything else?

A. I didn't understand beforehand the difference between Medicare and Medicaid or the importance of knowing about assisted living, continuing care retirement communities and nursing homes — how much they cost, what part is covered by some kind of entitlement or long-term care insurance, and how much money your parent has. There's no such thing as too many questions!

For instance, I thought I could hire a live-in aide for my mother in assisted living in New York, and she had a long-term care policy that would have paid for that. I was never told she couldn't and never knew to ask that question, so therefore I had no idea she couldn't until she needed one.

Q. You talk about a lot of things you did wrong, but there's so much you seem to have done right! When your mother wanted to take a creative writing class at her nursing home and she was seriously impaired, what did you do?

A. My mother was very antisocial, but desperately wanted to take this class; it was the only activity she was the least bit interested in. But by the time this class rolled around, she had started to lose her speech and couldn't hold a pencil. Logic says you can't take a writing class with this level of disability.

A. I went to the social worker at the nursing home. I didn't demand or even act as if it were possible, I simply shared with her my mother's enormous disappointment and together we brainstormed. The nursing home had a social work intern on the floor, so they paired her with my mother. She visited my mother, who liked her because she was young and smart and fully intact cognitively, which most people at a nursing home aren't. Christine got to the point where she could understand my mother's speech and took her to class. My mother would be wheeled out into the hall, and she would dictate to Christine, who would transcribe and read what she had written. They were sort of like Edgar Bergman and Charlie McCarthy.

Q. Your mother had severe deficits, yet you came up with ingenious ways to try to counter them. How so?

A. My mother was losing her ability to speak, and we were very nervous about the times when she would be in the nursing home and wouldn't be able to say, "I'm hot," "I'm cold," "call my daughter" or "turn off the lights." Having written about severely autistic children earlier in my career, I had seen various assisted-communications devices for kids who can't talk and thought they might work for my mother. My brother contacted an autistic school, found out who makes and sells them, and arranged for a salesman to come to the nursing home to test a variety to see what my mother could and couldn't do. We made a talking board that she wore around her waist with 32 buttons big enough for someone whose hands barely worked and programmed each with a request. She wasn't able to converse but she could make her needs known.

Q. What's another example?

A. When we got to the nursing home, they gave us advice, not just about taking care of my mother but of ourselves. At a certain point I was exhausted, overwhelmed and felt like I had absolutely no time for myself. It was my mother's physical therapist who suggested I take a four-day workweek if I could afford it. It was my mother's social worker who suggested I not spend that day with her, but have it be entirely for me. She also thought I should not tell my brother because she was afraid of what his reaction would be — Jane is working a four-day week, anything that comes up that fifth day, call Jane. And both the physical therapist and social worker said I should not tell my mother because she would have felt guilty. I never would have gone to a four-day week by myself and certainly not had the secrecy part.

A. If a parent is at home, insinuate someone into the household who isn't necessarily a professional to get them used to the idea of having somebody else around and getting a little help. My friend's mother, an intellectual, had a big apartment and was very isolated. She was not at the stage where she needed home health aides, and my friend thought it would be better to have another pair of eyes in the house. He suggested she take in a graduate student.

Q. At the end of your mother's life, she was totally incapacitated and suffering, and decided to stop eating. Did you have an end-of-life conversation with her?

A. Yes, the fact that my mother and I weren't attached the way she and my brother were made it much less emotional for me. For many adult children, this is a very difficult conversation. In my family, it was one my brother was incapable of having with her. In my experience, both with my mother and as a reporter, an older person is much more comfortable and even eager to talk about end-of-life issues — what they want and don't want. They may not bring it up because they're trying to protect you. Even if this conversation doesn't come as easily as it came to my mother and me, it's the adult child's responsibility to provide openings for that conversation no matter how uncomfortable, scared or sad it makes you.

Q. Do you worry about who will mother you when you need it?

A. Absolutely. I'm 63 years old, single and childless. I realize that the odds are overwhelming that hired help will take care of me. In my fantasy, I'm rocking on the porch of some fabulous cohousing kind of place with all my girlfriends, but I can't plan that because most of them are married and have children. I'm acutely aware of what this can potentially cost and am as well prepared financially as I can possibly be.

Q. How do you think your mother would rate the job you did taking care of her?

A. Way up there.

Sally Abrahms writes on aging and boomers for national magazines, newspapers and websites. She is based in Boston.